The Boston prep school that ALS patient Pete Frates attended has recognized him for creating the Ice Bucket Challenge that has generated a tidal wave of funding for research on the disease. St. John’s Prep named Frates, who was diagnosed with amyotrophic lateral sclerosis in 2012 at the age of 27,…
ALS Patient Who Created Ice Bucket Challenge Wins Three Honors, Rolls Out His Biography
A quote on a friend’s Facebook page caught my attention recently. Reading it was a reminder of how far I’ve come in learning to live with ALS. “It is not primarily our physical selves that limit us, but rather our mindset about…
The ALS Association has established a disaster relief fund to help patients and their families who were affected by Hurricane Harvey. Harvey brought strong winds and unprecedented rain that caused widespread flooding in parts of Texas and Louisiana. The Houston area recorded 20-plus inches of rain. A lot of people…
Clumps of the protein FUS, which are a pathological characteristic of ALS and frontotemporal dementia, can be prevented through a biological process called phosphorylation, a new study shows. The study, “Phosphorylation of the FUS low‐complexity domain disrupts phase separation, aggregation, and toxicity,” was published in the EMBO Journal. Phosphorylation…
Living With ALS: Chris Mehess’s Story
In this video from LA Fitness, 51-year-old surfing fanatic Chris Mehess shares his ALS story. Chris first began experiencing problems in April 2015 when he began having difficulties staying upright on his surfboard and regularly suffered from cramping in his ankles and calves. A few months later,…
Dutch researchers have identified new genes and biological mechanisms possibly involved in frontotemporal dementia (FTD) with and without amyotrophic lateral sclerosis (ALS). The study, “Susceptible genes and disease mechanisms identified in frontotemporal dementia and frontotemporal dementia with Amyotrophic Lateral Sclerosis by DNA-methylation and GWAS,” appeared in the…
5 Benefits of Cannabis Tea for Chronic Illnesses
Medical marijuana is gaining popularity as a complementary medicine to help with many symptoms associated with chronic illnesses. While many people are curious about how marijuana (or cannabis) may help improve their symptoms, they are also reluctant to smoke the substance. However, there are ways that medical marijuana can be administered, including…
Levels of some microRNAs (MIRs) regulating re-innervation and muscle regeneration among amyotrophic lateral sclerosis (ALS) patients, while others are lower, an Italian study has found. These molecules help distinguish slow from rapid-progression ALS, and the findings suggest that therapeutic approaches targeting these MIRs may help delay disease progression. The study,…
I’m Still Functioning
Speak clearly Use a fork and knife when you eat Hand-write your thank you notes The above (plus a few more) were on my mother’s list of good manners that she expected me to follow when I was a kid. They certainly helped me through the years and proved…
Researchers at University of Exeter Medical School in the United Kingdom have started an ambitious project to investigate how mitochondria flaws may cause the neuron cell death associated with ALS. Not only may their insights provide a better understanding of how amyotrophic lateral sclerosis arises, but it also may…
Recent Posts
- A story of a family’s loss offers guidance amid my grief with ALS
- MDA 2026: Insmed launches Phase 1 trial of INS1202 gene therapy for ALS
- Holding the line: Why I’d keep my ALS progression exactly as it is
- MDA 2026: Keynote speaker to MDA community: ‘Your voice is powerful’
- MDA 2026: New ALS platform trial adds RT1999 to speed search for treatments